Emily A Largent1, Maramawit Abera2, Kristin Harkins2, Sara J Feldman3, Wendy R Uhlmann4,5, J Scott Roberts3, Jason Karlawish1,2,6. 1. Department of Medical Ethics and Health Policy, University of Pennsylvania Perelman School of Medicine, Philadelphia, Pennsylvania, USA. 2. Department of Medicine, University of Pennsylvania Perelman School of Medicine, Philadelphia, Pennsylvania, USA. 3. Department of Health Behavior and Health Education, University of Michigan School of Public Health, Ann Arbor, Michigan, USA. 4. Department of Internal Medicine, Division of Genetic Medicine, University of Michigan School of Medicine, Ann Arbor, Michigan, USA. 5. Department of Human Genetics, University of Michigan School of Medicine, Ann Arbor, Michigan, USA. 6. Department of Neurology, University of Pennsylvania Perelman School of Medicine, Philadelphia, Pennsylvania, USA.
Abstract
BACKGROUND/ OBJECTIVES: Disclosure of Alzheimer's disease (AD) risk information to cognitively unimpaired older adults may become more common if preclinical AD is shown to be identifiable and amenable to treatment. Little, however, is known about how families will react to this information. DESIGN AND SETTING: Semi-structured telephonic interviews. PARTICIPANTS: Seventy study partners (mean age = 68 [±11]; 50% female; 70% spouses/significant others; 18% children, siblings; 12% friends) of cognitively unimpaired adults who learned a personalized AD dementia risk estimate and an amyloid-β PET scan result through their participation in preclinical AD research. MEASUREMENT: Interviewees were asked about their desire for information regarding their family member's AD dementia risk, baseline expectations of risk, understanding of amyloid-β PET scan results, and the impact of AD dementia risk information on emotions, health behaviors, and future plans, as well as on perceptions of their family member's or friend's memory. RESULTS: Interviewees generally understood the AD dementia risk information (83%) and considered it valuable (75%). Risk information perceived as favorable elicited feelings of happiness and relief; unfavorable information elicited disappointment, as well as increased awareness of the participants' memory and monitoring for incipient changes in cognition. While noting that AD dementia risk information was not medically actionable at this time due to the lack of disease-modifying therapies, some interviewees described changes to their family members' and their own health behaviors and future plans. CONCLUSION: Guidelines for the disclosure of AD dementia risk estimates and biomarker results to cognitively unimpaired adults should account for the needs and interests of individuals and their family members, who may step into a pre-caregiver role.
BACKGROUND/ OBJECTIVES: Disclosure of Alzheimer's disease (AD) risk information to cognitively unimpaired older adults may become more common if preclinical AD is shown to be identifiable and amenable to treatment. Little, however, is known about how families will react to this information. DESIGN AND SETTING: Semi-structured telephonic interviews. PARTICIPANTS: Seventy study partners (mean age = 68 [±11]; 50% female; 70% spouses/significant others; 18% children, siblings; 12% friends) of cognitively unimpaired adults who learned a personalized AD dementia risk estimate and an amyloid-β PET scan result through their participation in preclinical AD research. MEASUREMENT: Interviewees were asked about their desire for information regarding their family member's AD dementia risk, baseline expectations of risk, understanding of amyloid-β PET scan results, and the impact of AD dementia risk information on emotions, health behaviors, and future plans, as well as on perceptions of their family member's or friend's memory. RESULTS: Interviewees generally understood the AD dementia risk information (83%) and considered it valuable (75%). Risk information perceived as favorable elicited feelings of happiness and relief; unfavorable information elicited disappointment, as well as increased awareness of the participants' memory and monitoring for incipient changes in cognition. While noting that AD dementia risk information was not medically actionable at this time due to the lack of disease-modifying therapies, some interviewees described changes to their family members' and their own health behaviors and future plans. CONCLUSION: Guidelines for the disclosure of AD dementia risk estimates and biomarker results to cognitively unimpaired adults should account for the needs and interests of individuals and their family members, who may step into a pre-caregiver role.
Authors: Kristin Harkins; Pamela Sankar; Reisa Sperling; Joshua D Grill; Robert C Green; Keith A Johnson; Megan Healy; Jason Karlawish Journal: Alzheimers Res Ther Date: 2015-05-12 Impact factor: 6.982
Authors: Clifford R Jack; David A Bennett; Kaj Blennow; Maria C Carrillo; Billy Dunn; Samantha Budd Haeberlein; David M Holtzman; William Jagust; Frank Jessen; Jason Karlawish; Enchi Liu; Jose Luis Molinuevo; Thomas Montine; Creighton Phelps; Katherine P Rankin; Christopher C Rowe; Philip Scheltens; Eric Siemers; Heather M Snyder; Reisa Sperling Journal: Alzheimers Dement Date: 2018-04 Impact factor: 21.566
Authors: Donald H Taylor; Robert M Cook-Deegan; Susan Hiraki; J Scott Roberts; Dan G Blazer; Robert C Green Journal: Health Aff (Millwood) Date: 2010 Jan-Feb Impact factor: 9.048